I dont know what to do

[Member has resigned]

Hi,

I am new to this board, I am not a patient but the I am I guess the best way to describe it as the caregiver of an IC patient. It has affected our relationship so badly. The meds have affected her greatly. The antidepressants have left her emotionless. The pain affects her greatly. Every little problem has been blown up because we are both frustrated. She is not the greatest patient, she forgets to inform the doctors of important things. I cannot do this for her. I am lost. She is miserable. We have been together for 18 months and the last eight we have been dealing with the IC. It has ruined our relationship. She used to be a happy fun person, now she is terribly depressed. It kills me and leaves me feeling helpless when she is pain and all she can do is lay in bed.

I know its not about me, but i cant help feeling frustrated and alone. I cannot tell her and make her feel guilty. I have tried to talk to her.

I have been very depressed from this for the last few months. I dont know what to do.

[dyno]

HI,
It is really good that you are getting your emotions out about this, it really means you care and that is a good first step.

I have had IC for 29 years, I am now 46. I can tell you there are good days and bad days. All relationships are going to have good and bad times. Maybe it would be beneficial for you to see a counsler and maybe both of you could go at times also.

Having a chronic illness takes time to learn to adjust to and when she is in pain and hurting it does take a toll on both of you. I wish I knew more what to say. All I can tell you is that relationships can survive IC, you just have to be a patient, and work through some of this. If you are feeling depressed, maybe some medication would help you too. It is hard to deal with things if you are in a mental state like that.

Just wanted to let you know we care and that we will do what we can to help. We aren't Dr.s but we do care. :grouphug:

[Member has resigned]

Thanks,

The biggest problem is me. Seven years ago I was the primary caretaker for a parent who was dying of cancer. This has brought back alot of pain I thought I dealt with. Its not fair to to my fiancee, but its overwhelming me. She has had only like a total of 10 good days in the last eight months of 18 month relationship. We are (were) engaged and are living together. I focused so much on her I have let other things slide ie: business and family members. I guess I dont multi task well. I love her dearly. Its hard accepting the fact our sex life has gone to hell. But worst of all emotionally she is not there. Unfortunately, This has made the small things so big, that our relationship is going down the drain. Her self esteem is low, she is depressed and bed ridden and to top it off...She is a lousy patient and frustrates the doctors and me. Sometimes I see that when people get sick like this they focus on the illness rather than being proactive in treatment. Believe me I know its not easy for the patient but I have had large medical problems years ago I had to deal with alone and I know if your not proactive its the worst you can do to yourself. She has me to fall back on, and I know this sounds selfish but I dont have anyone. She spends 70% of the time in bed mostly from pain but I think the depression adds to it.

I love her and its very frustrating and when your frustrated your not doing or being the best you can be. Everyone tells me that doing what I have dont for the last eight months is more than they would or could deal with for such a short relationship, but I cant turn my back on her and I wouldnt. I love her..But I have to say and I know it seems again selfish...But I feel very unappreciated. The frustration is so overwhelming. I just cant make her happy anymore.

Thanks for caring

[stacyann_1]

Oh.. honey, I really don't know what to say, your post brought me to tears. I don't think it is selfish to say you feel unappreciated, you are just expressing yourself. Keep doing that, find people (like us) that will listen and express yourself as much as possible. Also does she use these boards? It might be very helpful for her. I think maybe you do need some counseling yourself. It's very hard to be a caregiver, and it's just natural that it has made you emotionally ill. That fact that you're reaching out to us is a great sign though. I have to believe that your partner will get better eventually or at the least have better control of IC in the future. Big hugs, and you and she will definitely be in my thoughts.

One other thing... I wasn't sure what you meant by she not being a good patient? Is it possible she just hasn't found the right doctor? Just a thought. Not always listening to the doctors isn't a bad thing.. you really need to trust your instincts with this disease I think.

Sincerely,
Stacy

[ICNDonna]

:welcome: I'm glad you found us.

It sounds like she is going through the same thing many of us did when we were first diagnosed. I think the single thing that helped me most was my husband. We had only been married a short time when I developed IC. When I felt sad, he was always there to just hold me. We've been married 32 years now and I think we're closer than we could have been without my IC.

Have you talked with a counselor? If not, I think that would be a good move. You need help in knowing how to best give her support.

Is she taking anything for her depression? The good thing about antidepressants is that they can also be very effective for pain. It's something you might mention to her doctor.

Sending encouraging hugs,
Donna

[Member has resigned]

Thanks stacyann

I appreciated your kind words. She is a member here. Its like I said sometimes you can get so caught up in the problem you forget to be proactive it trying to fix it. The antidepressants have just make her emotionless and tired (as does the IC). Unfortunately my best at times is not good enough. I too am tired and frustrated. I watch her every day in pain and it rips my heart out and I get angry. I am angry at the pain and what its done to us, not her but it doesnt always come out that way.

Unfortunately she thinks us being apart is going to help. We have both said we cant deal with it anymore. But it wont help. As much as she will never say it she needs me, I know this decision is hasty and thats the mistake. She thinks thats going to solve things. Unfortunately instead of talking we have argued. Unfortunately people who have not been her caretaker or lived with this give her bad advise.

I have learned the ones you listen to the least are the ones who have lived a charmed life. They often if faced with this would not be able to handle it.

But like I said I am lost and frustrated I love her so much, and yes men have this need to think they can fix it all and its frustrating when they cant.

Thanks again for the kind words

[Member has resigned]

Hi Donna

Thanks, yes she is taking antidepressants. They dont seem to help the pain or the depression. I guess I have come for advise her a little to late. IC has just made things hard to deal with, the little things wouldnt matter so much if we both werent already frustrated over her illness. Counselling would help if we both were willing to go. However she is not interested. She thinks that a split or temporary split will help? I am lost as to what to do. Of course we have our baggage but the IC I think is just making deal with everything so hard. I love her I know that and if she needs me I will be there. But right now I am an emotional mess. I am self employed although it has allowed me to take care of her and the kids with great amount of flexiability I dont have insurance so being able to afford counselling for me is out of the question. If we were to go to joint we could use her insurance. But like I said I dont think she wants that. She has so much on her mind with the IC dealing with us is just something she cant handle right now. There is nothing so sad as a great love lost.

Thanks

[stacyann_1]

:grouphug: I'm sorry hun. Wish there was more I could say. I defintely feel for both of you in this beyond hard situation.

Warmest Thoughts,
Stacy

[dyno]

I wonder if she has thought about how she will handle this is you are apart. You don't say if they are your kids, her kids, or both your kids, that is something she has help with now, and won't when you are gone.

Some communities through churchs have free counsleing available. I know this because my husband and I have been to some before. It wasn't at a church, it was in the professionals offices, funded by local churchs.

Maybe if she is a member on here she will see this and know how much you care. Good luck, and I just don't know what more to say.

[SharonA]

:welcome: :grouphug:

One of the phrases you used in your first post stuck out like a sore thumb for me. It was about the antidepressants leaving her emotionless. I am not a member of the medical field but, to me, that sounds like maybe she is on too high a dose. Could that be a reason for her mental state?

I was first dx'd with IC in August 2001. What caused me to go running to a uro was extreme, unrelenting pain. I had never felt such horrible pain in all my years. It was unbelievable and it caused me to become someone I did not know nor like very much. I concentrated on the pain and could not focus on anything else. Not even my husband. It changed our relationship and I was at a point where I did not care. All I cared about was the pain. It was foremost in my mind at all times. I thought my life was over. At least the life I had before the pain. I spent a great deal of time grieving over that loss and feeling very sorry for myself.

What I was not aware of, at the time, was that my husband felt like a total failure because he could do nothing to help me. All he could do was watch someone he loved writhe in pain every night. He tried to be supportive but I did not, nor could not see it. All I saw was someone who could not possibly understand because he could not feel the pain. I was so jealous that his life seemed to go on while mine just stopped.

Since then, I have found treatments that have allowed me to find my life, again. I am no longer in that day in, day out pain. I am on a low dose antidepressant called Elavil. I only take 25mg at bedtime. That is why I asked if maybe there is an overdose affect going on with her.

My husband and I, a few weeks ago, got into a conversation about that time in our lives and how it affected both of us. What I know now is that he was in his own state of pain. One that ran along beside of mine, feeding off my pain.

This disease can be horrible for everyone involved. Not just the patient but for everyone involved in their lives. I am hoping that you will be able to work this out together and come through it stronger and more able to deal with everything that the future holds for you.

:grouphug: :pray:

[Member has resigned]

Hi Sharon,

Thanks. You know something I realized today. Was that I am not who I was (Its funny she say the samething about herself) But I used to happy and active. But I feel guilty leaving her to do something. I cook dinner around her diet. So for the most part I eat what she eats. My only activity is the necessary chores I do around the house and I am giddy when she comes outside to play in her garden. We have couldnt make plans for the summer. We went to the beach for a day trip 3x this summer. I used to live at the beach (not literally unfornunately) but I could not really enjoy myself because I spent my time worrying about her. She is always askin if she can eat this or that and I have to read the ingredients. I dont feel like a lover anymore. My primary role is caretaker. I wouldnt trade it for the world but I know it sounds selfish BUT I really feel so unappreciated. She sleeps all the time, half the time she doesnt realize I check on her. She says now She hates the way I make her feel!!!!!,. We lately have been under so much stress When we fight or argue It is awful. We have no tolerance for each other. She gained something like 30lbs + and I try to make her feel desireable and attractive. I compliment all the time and she says this makes her feel pressured (making love is non-existant). I dont mean to do that. I look at her just the way I did 30lbs ago and I want her to know that.

I guess the major problem is we have only been together for 18 months, we were engaged. So rather dealing with the troubles of relationship is not worth it to her. Its easier to run and blame me for the problems rather acknowledge that we are dealing with a Extremely stressful illness that has changed both our lives. So of course we arent the same we were a year ago (she started with pain in January)

I have coddled, cuddled, nurtured her. Put her hot baths with towels and pillows to help her pain, dealt with the doctors, the presciptions, the diet, the non activity, the depression ect ect ect.....OF COURSE I AM NOT THE SAME. I hate it. I am so miserable right now. But off to the pharmacy to fill her prescription and figure out something different to cook for dinner that she can eat. I hate the fact I cant be perfect but I cant. Please dont think that we dont have other stupid problems in our relationship we do. But they would not be so large if we were both able to deal with it more rationally. I dont know. Thanks for the encouraging words. I know you need to make an investment in relationship and all. I love her dearly. But maybe it wouldnt be so bad if that when she was having a good day she wanted to put it towards us...rather than sitting on the couch or laying in the bedroom with the shades closed on a sunny day. We have a inground pool in our yard and we dont even use it. How messed up is this all I dont know. I am as I said frustrated and tired also.

[ICNDonna]

There are many counselors who are available at little or no cost. Check in your community for Family Service agency, or Catholic Charities ( I am not Catholic, but worked in a Catholic Charities Office more years ago than I like to think about --- and people of all faiths came there for counseling). And if she doesn't wish to go, go alone. You sound very much like you need help in dealing with your own feelings right now.

Donna

[Member has resigned]

Donna,

Your right, but after dealing with her on a day to day basis. I am drained. Its hard to try and be smiling and help her, by that time I am worn out and just put my stuff in the back of head. I know this is not emotionally healthy, I know it is a typical guy thing to do also. But right now its my only coping mechanism. I dont want you all to think its all her its not, its just that I know we would both be dealing with the "normal stuff" better if we were not dealing with the IC and ALL of its problems.

You all are so sweet, I feel bad complaining when I dont have to deal with "real" direct affects of IC, I am lets say just outsider to this all. I just wish I could get her to deal with the proactive part of it more. Maybe then I would not be so frustrated and tired.

Dont worry donna I used to go to Jewish family services for counselling and I am not Jewish. I am agnostic. God willing you all find relief very soon. Thanks again.

[RedLione]

So sorry for your frustration. She's caught in an every-single-moment misery she can't get away from, so she has to deal with it first and everything else comes behind that. And she doesn't have much energy or patience or focus left for anything else, I'm sure. She's overwhelmed, and she really needs a professional with good coping-skill advice. Maybe she wants to split to spare you, maybe she feels guilty, thinking she can't do right by you, or maybe it's just an excuse not to try. Whatever the reason, she feels 15 ways of awful right now and one can't think straight in the middle of all of that. SHE WILL FEEL BETTER when she gets the right medical and emotional help. It takes time. It takes a woman on a mission, a pitbull that won't let go. And we're sick, and we don't always have that kind of energy. And we don't always have someone helpful around, so she's very fortunate. Maybe she's giving you good advice, telling you to put yourself first, because you sound like you're on your own last leg to me. If you get depleted, neither of you has anyone to fall back on. Be very, very good to yourself -- you deserve it -- and then take all the great advice these wonderful women have been giving you. Wishing you two a calm, relaxing trip to the beach and a GREAT doctor with all the right answers.

[Melanie]

First, don't beat yourself up. You are an amazing partner for making such an effort to care for her and ask for help.

My IC began just a few months into my relationship. We are now very happily married and expecting our first baby. It can work!

Things that have helped us:
Therapy: I have a therapist, we have a couples therapist, he has a therapist. It's worth every penny.
Meds: It really does sound like she may need a different dose or a different antidepressant. I have tried many over the years before I finally found one that both helped my depression and didn't exacerbate my IC symptoms.
Working w/ Docs: It does sound like she isn't a proactive patient and this can be an issue. Perhaps it's the depression that is preventing her from focusing on finding treatments that'll help.
Physical therapy: It's helped me tremendously with painful sex issues.

Best wishes to both of you!
:grouphug:

[Member has resigned]

Well, as she just told me we have "other" issues. I know our issues, but I also know that we have argued awfully more and more intense since after she got sick. I have been faithful, caring, attentive, loving, generous, sharing and considerate. She must think that there is someone out there better for her than me. So all I can do is say ok. She is in severe denial about alot of things, We were lucky enough to have her brother care enough to try and help and he loves her dearly but he also agrees about her and we have vented our "issues" to him together and alone. Counselling would help but as much as she claims to be a "honest person" that is not true when you are in such deep denial and to go to counselling in denial will not work. It is ok for her to pick and choose what to do for her, but half the time if I dont do it it wont get done...this goes from children to her doctors. She has become reclusive, anti social, bitter and selfish. All clear definitions for depression. I have done all the cooking thank god I know how to. I havent cooked this week at all and if dont order out...She eats cereal and junk food. Its a very depressing household, how can this situation not make our existing matters worse?

I feel very frustrated, I love her dearly. But I am lonely, sad and frustrated emotionally.

She wanted me to come on here and see what you all say. I have and the difference is, You all are proactive and dont wallow in self pity...You appreciate everything your spouse or partners do for you, You all seem to try and make the most of your good days. She has focused on everything bad......She is definetly depressing to be around. And now that I have come on here and YOU ALL having been saying the same thing...her answer is the negative almost that you all are making excuses for US???? I am almost ready to give up, but tomorrow is another day. But I refuse to become a bitter person..I have become too much like her in the last months and I need to not let that happen.

Thanks for your encouragement.

[icpatient]

First, he doesn't do all the chores....I still wash the clothes....clean the kitchen among other things. As far as not cooking, he does do most of the cooking...I work outside the home and he is usually home during the day. Since 07/27 we have had neither of the kids home. So cooking isn't a major concern for me. BUT I have ALWAYS taken care of my daughter...she has ALWAYS come first!

Second, up until this week, he hated this board and would complain or make comments everytime I come on here. The only time I was able to come on here was at work or when he wasn't home. It was always, misery loves company.

Third, I am active in my treatments. I was seeing two different drs and informed both of them about the other and the problems I was having. I was assured that they would communicate to each other to be sure one problem or treatment didn't interfere with the other. Why is it considered anti-active because I believed the drs would keep each other informed? Trust me, I have learned my lesson.

Forth, we do have other problems besides my IC. Everything I say or do is always contributed to my ic and its not. One of our big problems is he has lied to me in the past and hid things from me in the present. That has nothing to do with my ic.

I'm sorry this has come to the ic boards and I have tried not to bring it here, but since he has decided to invade the one place i had to express my self, I felt it necessary to let everyone know that there is always two sides to every story. I appreciate the fact that he is learning stuff about IC, but to drag our relationship onto the boards here is unfair. I have changed my screen name because I am embarrrassed to be a part of this.

Just remember when you are giving out advise to anyone here about a relationship, there is another side of it.

[theclownster]

I agree with what you said Moby. We welcome everyone to the boards here and want to support everyone. You are right ICpatient - there are always two sides to every story - sometimes three (his, hers, and something in the middle). I don't think any of us are here to judge you nor your fiance. This whole IC diagnosis/treatment can be devastating for everyone involved.

I've had my own issues with IC that have had negative effects on my relationship with my husband. It's hard to make all the changes and still live a productive "normal" life. I've personally overcompensated by keeping myself busy, so that I can't get "too sick". Which as we all know is not the answer. I could have never made it through the past eight months without the support of my loving husband. He's lived with me before the diagnosis and afterwards. He's been through all the med changes and adjustments. It's a long road, but we are at a place where we can take whatever comes our way. I'm a lucky IC patient - as I think I have a mild case of IC. I can't say my husband always gets it - cause I don't think he does. What I can say is he sure tries to get it and supports me no matter what. That's the best feeling in the world. It's not easy to adjust to the changes. There was a point during all of this that I did not like the person I was becoming. It's funny how it takes looking back at the situation to realize that. I want to be the same loving person I was the day he married me, but sometimes it's just not that easy to do.

I hope that you both can find peace with each other and a place where you can both be supported. Take Care and remember you are not alone.

With Warm Regards ~
Jennifer

[stacyann_1]

:grouphug:

I'm wishing you both the best, icpatient and frustrated0823 - with the Warmest wishes for physically and emotionally pain free days ahead.
Stacy

[Katrina]

ICpatient, I am saying a prayer for you and hoping you can find a way to have a pain free life that is also peaceful and loving.... :grouphug: :kiss: :pray:

[July]

My heart goes out to both of you. Maybe you each could keep a journal and put your thoughts into words, then have the other read it. Agree beforehand not to argue about what is written. If you get angry after reading it, just take some time to let it pass before talking about it. :ignore: Perhaps meet each other half way? I hope your love that brought you together will win out in the end.
:)
July

[Pisces228]

ICPatient, I understand that you are upset to see your personal life on display, so to speak, but you should be THANKFUL as well because it's the people on these boards who really CARE and want to help you both through these difficult times.

I am married to a man who has IC (he posts as Andrew_J), so I can understand how Frustrated is feeling because I've been through so much of what he's talking about. What I've noticed about my husband and about the people posting on these boards is that IC is so dibilitating that there is a tendancy for IC sufferers to become very self-focused, and not be aware of the emotional turmoil their significant others are going through as well. You both need to have empathy for the other's situation.

Something I would really like to bring to your attention is that you may be experiencing emotional side effects from your medication. I never really thought about it myself until I experienced three distinct periods of mental and emotional change in my husband when he was prescribed medications that did not agree with him AT ALL. These medications worked fine for others, but not for my husband.

The worst was the Fentanyl (Duragesic) narcotic patch. Over a six month period, my husband became increasingly depressed, irritible, angry, aggressive, confused, and paranoid. I thought he was just depressed about his condition because he goes through bouts now and again. But when he got to the point were he was verbally abusive and emotionally cruel almost every day, I KNEW something wasn't right. The man I had fallen in love with had disappeared. When his feet started to swell, something triggered me to investigate his medication and I discovered that his symptoms WERE side effects of the patch, but that only ONE PERCENT of people experienced them. Somehow, I was able to get it through his head that he needed to switch medications, so I took him to his pain management doctor and he went back on Oxycontin. Within two days he was well on the way to being his normal loving self.

From the sounds of your situation, you MAY be experiencing something similar but not realize that ITS NOT YOU. Medication can do scary things to you without you even realizing it. I urge you to investigate this further, especially if you don't feel like yourself, emotionally. And please realize that antidepressants CAN can the reverse affect as well. It happened to my husband. That's one of the reasons he doesn't take antidepressants. Instead, he turns to the people on these message boards whenever he is feeling down. They are so caring and insightful, they always cheer him up and help bring perspective to his situation.

You are very fortunate to have someone who loves you enough to WANT to help you when times are so difficult for you. I can tell you, I've had people question me, too, about why I've stayed with my husband when times were at there worst. In retrospect, I think I stayed because I remembered what times were like at there BEST, and I KNEW if we worked together, that happiness would not stay elusive . . . and it hasn't.

My husband has been going through a very bad flare for about the last month. But because we have already go through so much before, we know that we will get through this just fine. I help our family by running errands outside the home, and he cooks and cleans in the home when he is able. And we BOTH take turns caring for our 4-year-old daughter who is the light of our life. If you love your significant other and you WANT the same things out of life, you DO find a way to make it happen. It may be an uphill battle, but you eventually reach a place of comfort and understanding.

I totally agree with ICNDonna about being closer to your spouse BECAUSE of your IC. It really CAN bring a couple closer together because its presence in a couple's life truly tests the strength of their love for one another. And if you have a love strong enough to handle IC, everything else is way more easy to deal with.

One last thing. Please don't be upset with Frustrated for coming onto this board. It sounds to me like he is really TRYING to understand you and your situation better by asking those who know best. Even if it took him some time to come around, you shouldn't be upset because he's finally comfortable asking for advice and guidance. The only people who are really going to understand HIS situation are others who are IN it . . . like me. And he's not going to find people like me just walking down the street. My husband and I both post to these boards and we really enjoy it. Sometimes we vent about things in our relationship, and other times we offer support to others who are in need. And, sometimes, we just come to read other's posts so that we are constantly reminded that we aren't alone in our situation.

Keeping the lines of communication open in such a relationship can be difficult, but it is WELL worth the effort. But it IS effort, and you have to both want it to make it work.

I wish you both the best of luck, and if you have any question, please send me a private message and I (and my hubby) will try to help you base on our years together.

Cheers!

[jen_dahling]

Well said, pisces. :)

[Pisces228]

But there sure was some baaaad typing! :)

[Andrew_J]

Need is your response to the agony of lack.
--Don Riggs

My wife, Picese228 puts it beautifully. Her touch with words reminds me of the happiest days of our lives, when we were two souls communicating thru the magic of the internet.

I truly believe that communication is the key to our relationship, if not all. We were, I feel,fortunate that we didn't have the chance to jump each others bones in that first blush of attraction. As Nietzsche wrote, "Love which grows too quickly is often too shallow at the roots." We knew each others hearts and souls before we knew each other in the flesh. That single thing, more than any one thing, has kept the core of our marriage strong.

At the risk of pop-psychologizing, both Frustrated and ICPatient seemed to be talking past or at each other rather than to each other.

In reading Frustrated's post I was painfully reminded of my own worst days in my marriage. I remember (and sometimes still am) irrationally angry with my wife, treating her as a whipping girl for my frustrations and forgetting, in my own pain and self-pity, the enourmous sacrifices and burdens she's VOLUNTEERED for. She doesn't have to be with me. Her life would probably be better without having my burdens to shoulder as well as her own and raising our daughter. But the love we have for each other and the seriousness with which we take the vows we took before God keep us together.

And we always TRY (not always successfully) to communicate; not talk past or hurl recriminations, but really talk and get to the bottom of whatever our issue(s) are. Counselors aren't a must; some people get much help from them. But, as a generalization, women seem to get more out of than men (which may just be more proof of how dumb men are!). I remember this one Marriage counseling seminar that was all the rage in the late 70s. My parents attended it. My mother thought it was just wonderful. My father thought it total waste of time. They are still together (they celebrated their 38th anniversary in July) tho' they did split up briefly.

And, to top it off, my mother was very ill with mirgraines and depression. Like many men (including myself) the sicker my mother got, the more enraged my father became, taking out his rage on my brother and I (verbally NOT physically). When confronted with sick child or wife, we men feel utterly helpless. The male mind tends to equate helplessness with weakness and weakness, we are told from birth, is not manly. It's too often hammered into our heads that its women who are the ones who are supposed to be weak. But that's sheer male vanity. And some women buy into as well.

When you couple this with the intensely self-centered nature of a disease like IC, it increases ten fold the already di


fficult endeavour to keep a marriage together under good circumstances.

I'm not speaking self-righteously or trying to lecture either Frustrated or ICPatient. I have been the ungrateful, bitter, cruel, raging jerk (and rather recently as many of you know!). But never constantly. And, even if my has to apply the advice with a 20lb sledgehammer, I do listen to my wife and take her advice; not as often as I should, but often enough.

You see, she needs to see that I value her input and her help. Refusing to take advice or join in your own treatment or make changes when things clearly are NOT working is relationship suicide. One may consider his or herself totally right. And you might be. But you'll also be alone. And if you're confined to bed 70% of the time, you can't survive without aid.

IC Patient--I think its time to reevaluate your treatment regimen. Most chronic pain patients need a maintenance pain killer (Duragesic, Oxycontin, MS Contin [time release morphine]). It can be the difference between disability and being a total invalid. I know that without Oxycontin I would be the latter. I've been undergoing a month long, excrutiating flare; some of the worst pain of my fifteen years of IC Hell. Without the narcotics, I'd be curled up in a corner, twitching, drooling on myself.

Taking narcotics is weakness. If you had to have your gall bladder removed, would you let the surgeon cut without anasthesia? If you have a headache, do you refuse to Tylenol or Advil? Of course not. Neither is taking poweful narcotics if you need them.

ICPatient you're going to lose this man if you don't start making an effort. I don't mean that you have to become superwoman overnight. I don't even mean that you have to succeed. But you HAVE TO try. It's completely unfair to expect your fiance to carry all the water in the relationship. If the "lies" and "hiding things" you speak of are that serious (i.e. infidelity, etc), then you shouldn't be with him. If they are minor things; the "toohpaste and toilet seat" fights as I heard one woman put it, then DROP them.

What's more important to you? Keep score for slights (assuming they are minor) and making sure to remind him with a sledgehammer of his faults, or thanking God for bringing a man into your life who's willing to carry you so far for so long after such a brief relationship.

You have to make a choice. He can't fix you. The doctors can't fix you. You can't fix it--in the sense of making it go away. But you have the power to change how you're living, to SEIZE a measure of control of your life.....

I can't imagine that a man who would do so much for you would be a bad guy. I'm sure he's human just like all of us, but the desperation and concern for you in his posts don't sound like those written by bad person.

He sounds like a man seeing the love of his life slowly destroyed by IC and her own refusal to make concrete efforts to change things. Its irrelevant if you're doctors are in communication. Whatever your doctors are doing is NOT working and you need to make a change. Personally, I've tried a dozen anti-depressants in the last eighteen years and NONE of them have worked (most caused side effects or exacerbated the depression). You may be similar. They help a lot of people. But the vast majority of those people are dealing with chemical imbalances; situational depression (my kind) can't be helped by blocking the degradation of serotonin which is what all anti-depressants basically do. (Serotonin is key to making dopamine, our brain's natural happy juice; for example, cocaine dangerous increases the production of dopamine, thus causing the high).

I'm sorry if this sounds harsh, but sometimes you need the cold blast of water from a stranger to realize what's REALLY going on in your life. I have in the past and probably will in the future. Relationship "baggage" can impede such awakenings, whether its your lover, mother, sibling, father, etc. Sometimes only an impartial perspective can help. Perhaps a therapist could provide this for you.

But, bottom line, whatever you do, YOU have to do it. Ain't no one going to do it for you. So if nothing changes in your health, if you remain bedridden, if you don't respond to any treatment, ask yourself this: how is being alone going to make this better?

"Losing love is like a window in your heart
Everybody sees you blown apart
Everyone sees the wind blow..."

Paul Simon, "Graceland"

[Andrew_J]

What does not destroy me makes me stronger.
--Friedrich Nietzsche


Piceses228 is my second wife.

Without going into unnecessary details, my first wife and I decided to have an abortion when she became pregnant. I'm not trying to wade into the politics of the issue. But my first wife was suicidally depressed the first six months afterward (my own guilt and depression over hit didn't hit until much later).

Many times I had to physically peel the bottle of Tylenol or painkillers from her fingers to keep her from ODing.

And nothing I could say or do could erase her guilt and depression. Like my wife and like you Frustrated, I too was reduced to impotence--watching the women I {at the time) I loved spiralling further and further downward.

She finally came out of the depression. But those six months were sheer hell.

So, in some small way, I can understand what my wife and Frustrated go thru. When someone refuses to change anything and insists upon wallowing in their own misery, there's nothing you can do.

Our marriage ended less than three years later. Thru the pain of the above period and the end of that marriage I became stronger. Though that was a period of near constant misery, it taught me something. When the going go tough, she bailed me.

Things have been immeasurably tougher for my second wife and I and she has chosen to stick by me, care for me, sacrifice her happiness and even health upon occasion. Picses228 has taught me the true meaning of love.

Sex and self-pity were the basis of the previous marriage. Love, communication and commitment are what has made this marriage a keeper.

As for sex, Frustrated, that's often one of the casualties of IC. Women seem to suffer more from it than men, but it can be quite painful for male IC patients as well. My wife has had health problems that don't need to be gone into hear, that combined with my IC, has often prevented sexual intimacy between us for substantial periods of time.

And the lack of love making has brought us closer, not further apart. Often deprived of the closest of physical intimacy, we've had to develop an intimacy of the mind and the soul. Sex is temporary. What we've forged in its stead is far stronger and more durable and a far more likely basis for a lifelong marriage than the temporary thrills of the marriage bed.

Plenty of people will sleep with you.

The person that holds you while you weep with pain. The person who cleans up after you have a Foley catheter disaster. The person who puts up with your unpredictable emotional swings. THAT person's the keeper.

At some point, in any relationship, if one partner stops working with the other, walls him or herself up inside and refuses to let their partner in or constantly treat their partner as a "whipping boy" for their frustrations and refuses to change, one has to stop beating one's head against the brick wall.

I had to do it with my first wife. That divorce was the second best thing that ever happened to me. The best thing is currently tucking our four year old into bed (poor little thing had a terrible allergy attack that kept her awake).

Sometimes, out of the worst of times can come the best of relationships. We can't tell you what to do. I can only tell you the difference between a relationship where the partners put each other first and a relationship where one partner puts themself first and relegates their partner to second place.

You know which kind you've got. If it is the real thing, then this rough period will make it better. If it isn't, then, at some point, battering the brick wall will finally end it.

The final question is: do you love each other equally? I loved Wife 1 far more than she loved me; I more of a means to her than a great love. No relationship can survive on that imbalance. If you're old enough to remember that song by the Firm, you're building "castles on the sand." And the next tide is all it takes to wash it all away. You can only do it together.

I think you two have a major decision to make. And you have to have the clarity to make the right decision--however painful it may be in the short term.

This is a disease of the family and the relationship. It affects everything.

God bless the both of you and I hope that, whatever the outcome, both you find happiness--together or apart.

[Member has resigned]

Hi,

I thought I would update you all on our situation. I have not posted in awhile (sinice ICPatients cheap shot post...lol...love you babee :love: ).

We are still a work progress. We talked, she has gone to pain management clinic, its slowly working (need to adjust meds). We acknowledged our mistakes and are working on fixing them. Her new treatment is resuming and We begin counselling tonight.

Any relationship is a work in progress. I will never leave this lady. She is my light in this life, but she frustrates me too no end.

Our biggest problem is we are so connected our pain is the others pain. Literally she wakes up I wake up, she is depressed I get depressed, she is happy I am happy. We often know what each other is thinking.

But to update you all, I am committed to this woman (some people have said to me "do I really want this for the rest of my life" and my answer is without a doubt "YES" and we will survive as long as we dont push the other away, we will survive. Thank you all for you concern and advice. Thats what I came here for. I dont like to talk to my family or friends about my personal business, because as was said here there is three sides to the story...Mine, hers and the TRUTH and sometimes those people you talk to will take that side and it makes for a very uncomfortable thanksgiving....but counselling, communication and love will see us through this.

NO my lies were not on infidelity, have never cheated on anyone in my life and would never think of it with this woman (although not to bring up a sore subject she sometimes doubts). Never figured out what that allure of cheating was anyways. They were wrong (my lies) but they involved my past.

We do need to put a greater effort into our physical relationship. That is important as well we need to take advantage of every good moment to get through the bad. We need to get out and do things when its good. But its a work in progress. I still feel alone sometimes..but she needs her space too and sometimes she will need to just wallow for a moment but then I will need to make sure she doesnt wallow too much. But I love her and I will love her forever and for always til my last breath on this earth.

THANKS AGAIN EVERYONE FOR ALL YOUR ADVICE AND CONCERN.

[theclownster]

Hi there! I just want to say that there a lot of you that have added some thoughtful posts. I enjoyed reading them to get your perspective - and feel blessed to hear your side of things in your lives. It's amazing how much perspective you can get by looking at things in a different light. It's good to hear that things are progressing in a more positive direction frustrated0823 and ICpatient. I hope that you are both able to find peace and happiness in the days, months, and years ahead. Thanks for sharing your story with us.

Take Care everyone!
Jennifer

[Andrew_J]

...sorry this is sooo long, but I sense a true bond between the two of you and I want to share part the story of my wife's and my experience as a couple living with IC with you. (Pls excuse any mistakes. I have dyslexia and my wife's in bed and can't check for me.)

It seems that YOU are the keeper. My wife is a lot like you. Your lady may not realize it now, but believe me, someday, as it did with me, it'll hit her between the eyes like a metaphorical brick. It did for me just weeks ago when I came out of horrid reaction to the Duragesic patch.

Picses has had (and even tonight I got very angry because I can't get my baby girl's favorite website, playhouse disney to load) to put up with my rages, depressions, passive-aggressive bs, occasional emotional abuse, working many, many extra hours to support us, sometimes to be greeted, when returning home, with me being a raging jerk.

I sometimes wonder why she's still with me. OK--I wonder a LOT of the time why she's still with me. I thank God for her everyday. True love? I don't know what that means anymore. Probably, it only exists in poetry. But no love poem every mentions the toilet seat and tooth paste fights.

But I do know I've found my partner and I have known REAL love for the first time in my life.

It sounds like you have too. We're in a pretty exclusive club. Some women would never have done the things for me my wife has. Some women, like my first wife, would have run at the first sign of trouble or cheated on me (she did both actually, wife 1 that is).

You see I confused the incredible physical passion of marriage one with love; it wasn't. She wasn't my soulmate. I certainly wasn't hers. I was a tool she used to achieve her plans and then discarded me like so much garbage. And I was beguiled by sex.

Pisces has endured so much more than Wife No. 1, the contrast couldn't be greater.

Words fail to describe this woman's love and dedication to me and our family.

In all my misery, my daily pain, drug reactions that caused the darkest depressions and the reddest rages, she's stood by me.

And I haven't always been a good husband. I've sometimes acted in the way your describe your lady.

One thing you have to understand, and I think you do, is that your lady and IC are inseperable.. Tho' I told my second wife of my condition before marriage, I was in a mild remission then; and neither of us had any idea how bad it would get. I was in denial; not wanting to deal with the obvious signs that IC was roaring back into my life Gary Hall in the 50m.

There is one story I want to tell, if you don't mind. It's very...unpleasant, so if you might wish to skip this part.

After my hydrodistention, there was a terrible problem. I began the bleed massively into my bladder. Ended up in the hospital for three days. I had to wear a foley catheter and collection bag for two weeks (which I why I cringe everytime I hear the words "Get me a Foley!" when we watch ER; I swear certain parts of my body want to run and hide and I actually feel pain in my bladder!).

The catheter was utter torture. If anyone ever wanted to get information out of me, they'd just have to show me a Foley and I'd sing like Jimmy the Weasel.

Anyway, one day, not too long after getting out of the hospital (just days), I was alone, she was at work. Something began to go very bad with the Foley. I tried to fix it myself. Needless to say, it didn't work.

Bloody urine ended up all over the bathroom floor and I had to lay down to avoid passing out, leaving the disaster for my wife (six months pregnant at the with our daughter) to clean it up. With a word of complaint, without b****g or freaking out, she cleaned it up and took me to the ER--after a full day's work.

That was when I knew I had a keeper.

Most folks would have said, "No way am I touching that!" Pisces didn't hesitate.

And she never has. I wish I was always the spouse for her that she is for me, but I know I can't. Most IC patients can't. Our disease robs us of that.

So yes, sometimes your lady will be an unbearable pain in the butt--I certainly am sometimes. It comes with the territory. It's one of the things IC takes from us--reacting normally to the usual crap of life.

By loving this lady, you've got IC now yourself--in the metaphorical sense of course. It affects your life only slightly less than yours.

And I hope your family's attitude is just concern for you. You should sit them down (especially with a copy of the "IC Bible" by Dr. Robert Moldwin--look his name up on Amazon.com and you'll find it; that's not it's title, I just call it the Bible because it's such a great resource) and explain to them the disease and what it does. Truly caring people should then understand that your intended is not a "normal" person in the health sense and never will be.

But to quote a schmaltzy song from my youth, you've given your fiance "the greatest gift of all."

There must be something good in her for a man like you to love her. She should keep that in mind. And so should your family.

truly good people rarely attract the truly evil. Even my first wife's actions were mostly from a childhood of sexual abuse from her father, physical and psychological abuse from her mother and physical abuse from her sister.

And for a healthy person to take on the onus of an IC afflicted "significant other" says much about both of you.

God bless you both and we wish you the best.

Andrew

[dancemomof2]

I just took time to read your post, and how lucky she is to have such support from you. I was married 6 months when I found out about my IC. It sure did stress the realtionship and still does from time to time. Hubby still has a hard timed ealing with me and the pain and realtionship issues. He is not near the person you are trying so hard to be, I soadmire you for your support through all this. I ma so impresssed with the fact that you accept counseling as a good thing. Hubby would never go that route. Keep it up you seem to be a great person.

[arcticfox]

Frustrated,

I cannot give you any words of advice like the women before me have, but I am sending an angel to watch over you and your fiance. :angel:

Take care and hang in there. It will be worth it in the end if you love her as much as you say you do.

Lynn :)

[Imustpee]

I have had I.C for 38 years, since I was 6 years old. It's all I know. I was never " Normal" before so I don't know any other way of life. I wish you both luck on finding something that will help you both live an easier life. I was just put on Elmiron 3 months ago...I have never known what it was like to go 3 hours in between trips to the bathroom. I am amazed when I do. I have had 2 bad flares this week,,Today I have been pee 29 times in the last 14 hours. I was actually able to hold it for 2 hours this afternoon, and last week I was up 8 times in the night and almost cried because it was back.. I.C. is terrible, and we have to do our best to live with it. This is the only life we are going to get and I will be damned if I am going to let it win. I have a treatment in the morning and will start 2 - 3 times a week treatments agian along with my 4 pills a day. I guess I am so used to the pain I just don't notice it as much as others that haven't had it all their lives. I am going to talk to my dr tomorrow and see if there are any other treatments we can try. Hang in there...there are many of us here that understand.

[jcw]

I fiance and I have been together for almost 2 years. She was already diagnosed with IC when we had met. I know her before we dated and then when we started dating, I knew a different her. IC is a very difficult thing to deal with, and it seem at times that nobody understands what we the caregivers go through. It has been rough at times, but I just remember, that she is the one going through this and I have to be there for her. Just hang in there, she will be better sooner or later, and hopefully sooner. Email me if you ever need to talk, I will understand.